When speaking to moms who have children with autism, there were two common factors -- all deeply love their children and all wish they could go back in time to when they first learned their child was on the spectrum and tell themselves some things they learned along the way. These moms reveal that they wish they trusted their instincts more, saw the signs and accepted them. They also wish they had different support from professionals, better support, and some feel they needed to take more time for themselves for their mental health and so they could learn more.
Here they share their reflections on autism with the hope that it helps other parents who have a child newly diagnosed.
Christa Proctor wishes the doctors/professionals were more upfront. She would have liked to have heard:
"Your child probably has autism." "You need help!" (I would have gotten help much earlier.) And "Kids can recover from autism."
Andrea wishes she listened to her instincts more:
[I wish I realized] that there's no "quick fix." I also wish I had listened to my gut more instead of blindly agreeing with school administrators in his early-elementary school years. Now, if you were to ask those administrators, they wouldn't think I'd gone along with anything they said. I was often questioning and challenging their ways. However, in my hope that he could remain in one particular inclusion program, I didn't come out and fight the way I should have. It wasn't enough. I gave in too much, going along with the program, believing in the administrators' ultimate expertise. I should've had more faith in the fact that a child's parents are the best and often only experts about that child, no matter what someone's degrees state.
Carole feels the same about instincts and says she wishes she didn't listen to the negativity from others:
Trust your instincts, step back, think, and breathe. Seek help immediately. Don't be afraid to ask for what you need -- nobody can read your mind. Don't listen to people talk about failures and shortcomings. Even small accomplishments are triumphs.
Amy is happy with what she knew, and didn't know:
Honestly, there’s nothing about our journey with autism that I wish someone had told me in the beginning … If someone had handed me a crystal ball when Jonah was 2 and shown me everything we would have had to deal with, I’m sure I never would have been able to handle it.
Jaderica wishes she saw the signs, and got the family more involved sooner:
I wish I had gotten a list of the warning signs and red flags associated with autism earlier -- there are a lot of them in our family and I hadn't even been aware that they were anything to be concerned about.
I wish that I had figured out sooner the importance of getting the whole family involved in helping Tommy. .... Most of the things we do with him are very simple and a lot of them are actually fun -- but it's amazing how much of a difference that it makes when it comes to his retention and actual use of the skills we're trying to help him learn.
Ali wishes we all realize that every child with autism is still an indivual with needs specific to that child. And moms need to be that child's biggest advocate:
Part of the process of coping and growing for us was learning things as we went along. Every child with autism is so different. I do think one of the biggest things to know is that you really do need to become an advocate for your child. You need to be in contact with the teachers and the aides -- communication between all the parties is such a big part of this experience.
Shannon wishes all parents who have a child on the spectrum continue to see the beautiful and amazing person that child is and always will be.
Your child's own wonderful self should be your first priority. His or her autism may loom large, but it's secondary. No one can predict -- or should limit -- the future for any child with an autism diagnosis. Be skeptical when it comes to autism treatments and therapies -- don't try something on your child just because you really, really want to believe in it.
Holly Robinson Peete wishes she know earlier that if children aren't connecting verbally, they still are inside. And she also wishes she was aware of the money they would need for the future:
I would've been more aware of the things I said about my son in front of other people and just been more conscientious of his presence. He'd be over in the corner by himself lining up toys or twirling around in circles, and people would ask, "What's he doing?" I'd learn different language like, "He needs that to stimulate himself. That calms him down." Not just saying, "He has autism so he spins." He [could hear] me saying that and make the connection, "Mom really gets why I'm doing this." I would have been way more conscientious about language growing up if I had to do this again.
I also wish I had known how expensive it was. Yes, with the disclaimer that Rodney and I have nice-paying jobs and we're not, as far as income, a typical American family, and we were blessed to be able to afford it. But we felt it. ... I think I would've have financially planned differently had I a better idea of what this was going to cost. And even if you have [money], you still argue about how you allocate these funds for therapies. It's excruciatingly unaffordable. Again, we were blessed to be able to come up with the dough, but in the end, we felt it and can't even imagine what it must be like for families that go paycheck to paycheck and try to afford to treat their kid as well.
Holly also said she wishes she took a little more time for herself. She also shared taht she would take more time with her husband. "I'd value more what my husband's fears and worries were."
If your child has autism, what do you wish you knew early on? What can you say to moms who have just received a diagnosis?
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